Ibrance (Palbociclib)
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I wanted to share an update from my oncology appointment. I met with my new oncologist and I think I am going to like him. Both my daughter and I felt much more comfortable with him this time then the first time we met him. He was well prepared this time. We talked about surgery and starting back on Ibrance. My red counts dropped with surgery and they are not coming back up quickly. He plans to monitor them and treat them accordingly instead of the orthopedic Dr. He is concerned about how ibrance will effect them going forward. I made the comment about how I just hope all the pain I have been through was worth it because of how unpredictable cancer is. He took time to explain in detail my initial cancer diagnosis. He told me that even though I had a large pleural effusion it was caused by one tiny little tumor that responded well to treatment and is now gone. He really encouraged me. He feels my prognosis is good. No guarantees of course. It was just so encouraging to hear. Now it's time to get this knee moving and get back to life.
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@brutersmom so glad to hear the good news about your new Onc (and new knee)!
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@brutersmom Oh that walk looks delightful. I'm so glad you are improving and like your new MO. I checked with Nurse Practioner today and she does not feel Ibrance is the cause. There's the fact I have MS, which is an autoimmune disorder and colitis is also considered autoimmune. Now I also saw a small number of Ibrance user did develop colitis, so, who knows for sure.
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LONG POST ALERT ⚠️
Hi all, I do hope we're all doing well. I just remembered my first Oncologist always reminded me to take loratidine and NOT ever stop. He never explained to me the reason (yes, he was like that, plus hostile to questions. I think he wanted to feel indispensable). Anyway, I've been had a nasty cough at night for very long, each time I restart ibrance. But it stops during my one week break. I keep forgetting to mention it to my Oncologist but today I'm calling him about it and also going to see a physician about it. My question, tho, is prompted by a reminder from my Zoom group moderator, Melissa, that an IBRANCE induced cough could mean pneumonitis.... and.... she reminded me that pneumonitis can be fatal. That was at yesterday's meeting. Last night my cough was real bad, and in desperation, I thought to myself, "This happens when I lie down so let me try pantogerd. And guess what?? The cough stops almost immediately. So clearly there was an acid reflux issue somewhere in all that. And I managed to get some rest. This morning as I was having a conversation with myself (I live alone so I do that a lot), one part of me remembered the Loratidine. So I'm restarting that today without fail. But I'm interested to hear from anyone about your experience or knowledge of the role of Loratidine in preventing lung inflammation during IBRANCE therapy. The cough never used to happen when I was on Loratidine. I just forgot about it somewhere after I changed MOs, and my current one doesn't seem to know much about preventive measures during IBRANCE. I also read that it's actually considered part of the treatment plan, due to its effect in preventing inflammation. Anyone out there??
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@Rosebessie interesting about the lotradine. That is often used to help with joint pain that people get with aromatase inhibitors. I find it drying. My cough with Ibrance comes from the dryness I get with Ibrance. For me that is helped with saline nose spray, eyedrops, a mouth moisturizer, and a humidifier near my bed.
Yes I just switched to a new MO he is younger. My old MO who was near retirement told me that my chronic fatigue was from my low white count. My new MO fresh out of his Fellowship wants to rule out anemia for my chronic fatigue because my red counts are always low since being on the cdk4/6. I also found it interesting that this last year my sodium has also been low. The hospitalist who was younger told me when I ask that we don't put people on low sodium diets when there sodium tends to run low even with high blood pressure. My PCP who is nearing retirement said yesterday that I should go back on a low sodium diet for my high blood pressure. That a regular sodium diet wouldn't help my blood sodium. It is confusing sometimes.
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Lately I have been more focused on my knee recovery which is going well then on cancer. Suddenly tomorrow is February 15th and it is time to start taking Ibrance again and suddenly I am all depressed and teary eyed. 😢 I dread having to take it each night. Maybe it wouldn't be so bad if I didn't have to push it out of the foil each night but instead I could put it with my BP meds and letrozole.
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Oh, Brutersmom, I 'm so sorry about the Ibrance thing, but happy that your knee is coming along well. I wish I had something to say that could make starting the Ibrance again better, but I don't. Maybe someone else will have some perspective that might make it easier. Taking a break from these drugs really makes us realize how much they take out of us when we do take them. Hugs and good luck.
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Hi all ,
Brutersmom- I'm sorry that restarting ibrance is hard. I haven't had a break yet (except for the first 6 months having an addl week off due to low anc). I'm happy to know your knee is healing well and hopefully you won't have side effects from ibrance . The never ending cancer meds does wear one down for sure .
I'm the cancer clinic for my faslodex shots and blood tests. Already received my first blood panel result and my anc is 1.19 . It hasn't been over 1.0 on this day (day 28) very often ! I started scheduling afternoon appts and as I had read , anc is higher in the afternoon .
Hope everyone is doing well, happy Mardi Gras !
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@brutersmom hallo!! Nice to know your knee is doing well. So sorry about your current emotions over restarting IBRANCE. I hope it makes you feel a tiny bit better to know I've been following your knee surgery journey and your positive attitude plus determination to get that surgery done has encouraged me. I love you for that. I also know my body may react differently but you've given me courage and I plan on getting it done sometime before 2024 is over. For now I send you hugs and best wishes that all shall be well 💕🫂.
Also. Are you starting the new IBRANCE scheduling? Im so fed up of the frequent Neutropenia, especially after last months flu which felt more like pneumonia, that I'm considering the 2weeks on and one week off. You did mention your hospital successfully adapted it as an alternative to the 3weeks on and 1week off for patients who suffer persistent neutroprnia?? I just need to convince my MO because like all doctors, he doesn't take well to ideas coming from a patient, regardless of their source or proven success elsewhere. For now, I wish you a positive day.
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@aprilgirl1 hallo. Its been a while. Hope you had a great mardi gras, shrove Tuesday or pancake day.... traditions applied. It's good to know your ANC was above 1.0., and I hope all went well with the Faslodex. You're a trooper. Hugs 🫂
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@brutersmom thanks for that info about loratadine. It's very interesting coz I've also been feeling like it exacerbated my night cough coz it caused my throat to feel dry. I shall try it again and monitor that reaction and share the outcome. Right now, my GP advised me to use Cetrizin for my productive post-flu cough which was causing havoc to me. That, a double dose of my seretide inhaler and maybe also.... the fact that I'm on my off ibrance week means my cough has gone. Thank God. It got so bad I'd cough all night and in the morning be completely worn out.
As for low sodium. I'm hypertensive and have been on meds for 9 years. My hypertension is well controlled by the medication but I was experiencing unexplained headaches. My blood pressure was very OK, but the GP advised I go on a low sodium diet, do regular walks and also gave me meds for the headache. When my sodium level dropped, my MO advised me to stop that low sodium diet coz it could affect my Thyroid function which was at the time normal. So I went back to regular diet. A lady in my Zoom group told me she gets low sodium in her bloodworks too but not to worry coz it's an ibrance side effect. So I salt my food as normal and my sodium level is OK. I'm just sharing in case my experiencecan help.
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wonder who else has surpassed 5 years on ibrance? I have been on it now 5.5 years (was on full strength until about year ago lowered to 100mg dose instead of 125mg). I was de novo stage 4 at diagnosis with bone mets, the breast tumor and lymph node activity but not long after discovery everything died and seemingly am NED for 5 yrs now but wondering now if letrozole and ibrance could cause me some health problems over prolonged usage with NED. still waiting for possible inactive cells to be activated and growing. at diagnosis I dropped carbs, started turkey tail mushroom dosing along with daily THC and CBD dosing in addition to the letrozole and ibrance. I added fenbendazole after about 7 months and for a time also used disulfiram but over last year dropped THC and not dosed CBD as much as I probably should (to increase Resolvin and fight inflammation from activating dormant cancer cells) I have had some deterioration of foot and back but it may be hereditary and not totally due to letrozole depletion of estrogen. I do get zometa infusions every 3 months to supposedly strengten bones.
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Fila-I have been on Ibrance 7 1/2 years now. I hear your concern-will Ibrance and Letrozole ultimately do harm? One woman Faith, stopped Ibrance and just stayed on Letrozole. She hasn't posted in quite some time. She also was in her late seventies/early eighties so I think any cancer she had would be slow-growing. I take ginger every day in capsule form, MSM for my hair but no other supplements other than vitamins. I'm staying the course. I was very sick before Ibrance. Currently I have a great life so I'll stick with this unless something changes. Good luck to you!
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filabrasileiro - fenbendazole is a nonspecific chemo, scores like taxol in the lab, and normally it would never be combined with endocrine therapy, you might be hurting your chances with that one…
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chicagoan- what is MSM for hair? Does it help a lot?
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Cure-ious-MSM is Methylsulfonylmethane-a type of sulfar. I've been taking it for at least 4 years. It seems to really help the hair on my head. My eye lashes and eye brows can get kind of sparse but the hair on my head is fairly thick. I must have heard about it from someone on these boards. I asked if it would be safe to take and the late Philly had done some research in her Chinese medicine studies and thought it would be fine. It was very bitter when I first started mixing it with water, but now I barely taste it. I have it with water first thing in the morning.
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@filabrasileiro hi, its lovely to meet you, and read your treatment story. That's a lot of stuff you're taking beside your MBC meds. Is that all since diagnosis? I can understand why you'd take the turkey tail mushroom, THC and CBD to help with the ibrance+letrazole side effects, but why you need to take the fenbendazole and disulfiram? Are they treating something else? I hope you don't mind me asking. If you do, please ignore my question.
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rosebessie I started turkeytail (bulk powder 1 tsp 2x daily) CBD (50mg 4x day 1hr before THC same dosage) a day before I started Ibrance and letrozole which was given to me at first oncology appointment. I had mets in hip, spine, rib plus tumor in breast and cancer in lymph nodes auxillary to that breast at diagnosis. the other I added later (fenbendazole about 6 months after diagnosis and disulfiram about 8mo after diagnosis. my very first cancer marker number was 65 and rose to 100 and then over a few months just steadily dropped off to under 32 about a little over a year past diagnosis they surgically went to implanted markers left at breast biopsy to remove tumor but it was just a sliver of scar tissue that had no cancer cells after analysis. 1 woman I know had same hormone positive her2- MBC that had gone to kidneys and she was on letrozole (couldn't handle ibrance) but not long after taking fenbendazole her kidney issue cleared and she was NED and she only was using letrozole. I knew turkey tail would boost immune response and I had a friend who knew that CBD and THC helped fight cancer and subsequently I read article titled "New Principle for Eradicating Cancer: Leave No Dead Cells Behind" which you can find on google search but CBD is a potent anti-inflamatory (20 times more powerful than aspirin) so it actually accomplishes what this researcher has found with aspirin as far as increasing RESOLVIN and reducing metastisis. Also CBD And THC both are metabolized by the same liver enzyme as Aromatase Inhibitors (letrozole included) which has the effect of potentiating the effect of the aromatase inhibitor by leaving it in the system longer due to slowing down the liver metabolism (this was a warning in an article I read about using aromatase inhibitors for boys which are real short talking about the effect of cannabis while using the inhibitor). Disulfiram is known to be anti-cancer and chelates and depletes copper (there is actually an oncologist who has a whole study on copper depletion to keep breast cancer from growing and metastisizing with copper depletion therapy with expensive type of salts (forget now the acronym for those specific salts as a potent copper depletion agent in addition to diet away from copper rich foods). there is an interesting story of a woman who had Metastatic breast cancer who decided against treatments but did start taking antabuse (disulfiram) for alcoholism treatment and she subsquently got killed in an accident but somehow they found her cancer mets had died with only disulfiram being taken. so I thought that was very interesting….also wisconsin cancer researchers studied disulfiram with 2 main CDK4/6 inhibitors and they found in petri dishes that cancer cells were significantly dying more with disulfiram used with the CDK4/6 inhibitors together (especially with Verzenio but also noticably with ibrance as well. I tried messaging some of the researchers but didn't get response back. the main problem is that disulfiram is quickly metabolized in liver so the potent effect would not last for long as it is changed through metabolism via liver but there is no doubt it has anti-cancer effects but it is an off-label use which one Israeli Oncology expert wrote a lengthy commentary condeming western medical system in regards to its approval and use for the anti-cancer purpose being impossible under our messed up system.
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@filabrasileiro thank you very much for taking the time to share the background of your treatment, in answer to my question. And wow!! Such a wealth of useful information in your answer. I feel like I've just had a free tutorial on the management and self advocacy of Metastatic Breast Cancer. I've absorbed the details. I feel you're very fortunate in that you don't seem to have experienced any extreme adverse reaction to any of these supplementary medications and supplements, seeing as you're now clocking over 5 years since diagnosis👏👏👏
My case is a bit different due to a myriad of commodities. Im asthmatic (so my lungs are compromised), I have arthritis, I'm hypertensive, have peptic ulcer and consequently a hiatus hernia, have cholesterol, and gave up mushroom some 20 years ago due to adverse reaction. Ive reacted to every supplement I tried since diagnosis of MBC. So I cannot use some of the solutions working for you. But you're an awesome example of positivity and self advocacy.
I'm looking at a change from IBRANCE coz its doing havoc to my lungs. That makes me sad coz so far it's shrunk my original breast tumours to non-existent, and there's been NEAD to date. Plus, changing to another CDK4 Inhibitor reduces my options.
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@filabrasileiro thank you very much for taking the time to share the background of your treatment, in answer to my question. And wow!! Such a wealth of useful information in your answer. I feel like I've just had a free tutorial on the management and self advocacy of Metastatic Breast Cancer. I've absorbed the details. I feel you're very fortunate in that you don't seem to have experienced any extreme adverse reaction to any of these supplementary medications and supplements, seeing as you're now clocking over 5 years since diagnosis👏👏👏
My case is a bit different due to a myriad of co-mobidities. Im asthmatic (so my lungs are compromised), I have arthritis, I'm hypertensive, have peptic ulcer and consequently a hiatus hernia, have cholesterol, and gave up mushroom some 20 years ago due to adverse reaction. Ive reacted to every supplement I tried since diagnosis of MBC.
And now I have to change from IBRANCE coz its doing havoc to my lungs. That makes me sad coz so far it's shrunk my original breast tumours to non-existent, and there's been NEAD to date. Plus, changing to another CDK4 Inhibitor reduces my options. But let ne accept and move on. I'm really happy you're doing well. Thanks for sharing
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I just want to correct my earlier post-I take ginger every day-not cinnamon. I buy dried, organic ginger and make my own capsules. Someone's MO recommended off the record for her to take a tsp of dried ginger every day, so I started doing that too.
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Chicagoan- How much MSM do you take? And I gather it hasn't affected your liver enzymes?
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Cure-ious, I have been taking one tsp (4g) of MSM daily since November 2019. My liver enzymes have been normal all this time except for one reading this past year. My PCP considered it a blip or even said it might have been a mistake. I rechecked MSM last night and saw that it is also an anti-inflammatory, which I didn't even realize. Maybe it has had some protective action? I just wanted my hair to be thicker🙂.
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Ohhh, that's interesting, @chicagoan!
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As I am reading down through all of your comments, I find some of the supplements very interesting. My husband takes a lot but most of the time when I google supplements thay have no studies verify that they actually work on humans or to get the results they require unsafe amounts. I do know ginger helps to settle stomache issues. That is why you get ginger ale when your stomache is upset. It would make sense for a Dr to suggest taking it to minimize stomache issues. I eat ginger candies recommend by an Indian friend.
I find the MSM interesting. My hair and nails grow fast enough sometimes I feel I can see it grow. My hair is thick but baby fine. I wwnt through a spell last fall where my hair seemed to thin but now it is coming back. I have the cow like to prove it. 🤣🤣🤣. I have never tried turkey tail. A lot of people have found it keeps there neutrophils up. I have had to many reactions to mushrooms to try it. As for the other things mentioned, I am not sure.
My nails are brittle right now. In two weeks when I have my blood work after being on Ibrance. I am also having some test done to find out why my red blood count didn't come up before surgery. There was also a slow response after surgery. I was told I didn't lose enough blood during surgery to react the way my body did. Three weeks after surgery it still hadn't come up like a healthy person. As a result my nails are brittle and full of ridges.
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Chicagoan, I got some MSM today, its in horse tabs with glucosamine, as its sold in the arthritis section. My hair is basically patchy straw and my nails have deep ridges, so it will be obvious if it helps, thanks!
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Cure-ious-I hope that the MSM helps, although my nails are still terrible. I tried that product you recommended but gave up b/c I hate wearing nail polish.
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Am posting after a long gap. Want to let you all know that I had my recent Pet scan this week and got all clear.
My first diagnosis was in 2004 and recurrence in 2021. I am on my 29th cycle of Fulvestrant and Ibrance. In December 2021. I had mets in spine, lungs, liver adrenal glands, chest walls. My latest scan this week showed complete resolution and complete response to treatment.
So there is always hope..
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@chicagoan and @cure-ious , hmmm I might try this for hair ! My hair has continued to thin. Some grows back and seems to stick straight up ! My oncologist told me I can use minoxidil. Which i plan to start today .
@malebreastc thanks for posting ! Congratulations - such great news .
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